Saturday, April 27, 2013

Today has been rough for Ed and me. I put the TV on for Brian as soon as we got downstairs and I think we both prayed he'd stay occupied and not notice us. We were both in bad shape. We aren't hiding all of our emotions from him, don't misunderstand. It's just that sometimes we need a little break from his incessantly cute questions and endless cheer. But when he suggested that we all go up to play in Gavin's room, we followed his lead. The two of us in our pajamas - close to lunchtime - read books and played for close to an hour as a family. I'm sure all of us were in that room this morning.

And then, in a move that will ensure she gets the "Sister of the Year" award, Aunt Bean came by with Brian's cousins, Shannon and Claire, to steal Brian for the day. They were going to cousin Brendan's baseball game, to a park, and to "Aunt Bean's fancy house" as Brian calls it. I was happy he went willingly - and I hate to say that I needed him to go - but I did. We both did. We just needed a little peace. Today is really not a good day. It is such a struggle to balance personal needs and Brian's needs right now and I just hope (and pray and hope and pray) that he doesn't feel like we are pushing him away when we aren't with him every minute. Even putting the TV on all day is so unlike me - but it buys me some quiet time and I'm grateful for that.

It's so important to me for the world to know how wanted... how cherished... how loved Gavin was. I was so happy to be pregnant with him... to name him... to meet him. I never - ever - felt that his many needs were a burden. I took pride in researching ways to help him... trying different alternative methods to heal him (many of which worked!)... going to shrines to ask for miracles... begging doctors to see him... writing letters to appeal for him... and always believing that one day he would walk and talk. I just knew that one day he would tell us that all along he knew what was going on - he knew how we tried to help him - how we would have gone to the ends of the Earth for him - how we loved him.

I saved everything along the way. Well, I stopped saving hospital bracelets after the 20th. I kept NICU items, special articles of clothing, cards, artwork and more. I actually displayed some of the items at the services. They are exactly as they were in his memory box - with notes that were written when he was a baby...

This is a photo album filled with ultrasounds. The first ten or so pages show Gavin and his twin... and end with a 4D shot of his precious face just a few days before we would meet him.

I saved every card from every baby shower...

While Gavin was in the NICU, Ed spent time each week picking out a new card to tape over his isolette...

And these are the cards we received to celebrate his birth.

And two of the many things I saved from the NICU.

I just knew - with all my heart - that we would sit and go through all of this one day. And I could see him smiling as it sunk in just how cherished he was. That every little thing I saved meant so much to me... and it was my way of showing him how I adored him - even before he was born.

Today is such a hard day.

But - in my despair - there is light peeking through. Actually, more like light barging in and enveloping me in blanket of hope.

Remember the "three year old little boy in Texas" that was meant to receive Gavin's liver? His name is Miles. I was so crushed when the surgeons decided that Gavin's liver wasn't usable, as you know. And, in a miracle of sorts, his Mother and I connected through the power of social media. There are no accidents. Well, this morning they got a call that there was another liver available for her little boy. They got on a private plane and flew to the hospital. His surgery is scheduled for 5:15pm if all is a go - so please send every ounce of energy his way when the clock hits 5:15 in Texas.

I wrote this on her Facebook page today:

As of right now, over 12,000 people have seen my post asking for prayers, positive energy and strong, happy thoughts to be sent your way, Miles. And I've personally asked Gavin to try to work some magic from Heaven. If he's as popular in Heaven as he is right now on Earth... he's got to have some good Heavenly connections to see you through this. The Leong family is rooting for you, buddy!!! ♥

And, with all that she has going on right now, Mile's mommy graciously replied with:

I had to hop on here and tell you... on the plane, once above the clouds, it was so peaceful and beautiful. The sun was beaming down on our plane. Through each of the tinted windows I looked through, little rainbows surrounding us. Surrounding Miles. I feel him, Kate. I truly believe Gavin is somehow watching over Miles today. I am so thankful we made this connection and I have a chance to share.

Technically, we should never have met. They have strict rules and really strive to protect the donors and recipients from contacting each other for various (and understandable) reasons. But I truly believe, with all of my heart, that we were meant to not only meet - but comfort each other. Help each other - and help others to see both sides of organ donation. It is truly such a gift. What we are doing for each other is better than any help we could receive from a neutral counselor or a brochure. This is real life. It's better than any public service announcement, for sure.

I know it can be hard to imagine your child or husband or wife or loved one dying. And I know it would then seem like an insult to put them through a surgery to remove organs. But when you see my story... and the story of Miles's family... I hope it changes your perspective. I never thought Gavin's body represented who he was. It was truly just a suitcase carrying the most precious cargo. And, isn't that true for all of us? A body is just that - a body. It doesn't define YOU. I hope that part of Gavin's legacy is changing people's hearts and minds when it comes to organ donation. It will always be the proudest accomplishment of our lives that our son was able to give someone the gift of life... and was able to convince many, many others to make the simple choice to do the same. (By the way - you may not know this, but you can still have an open casket for the viewing after organ donation. Just so you know.)

You don't have to wait until you renew your licence. You can CLICK HERE and do it right now. Find your state and register - and if you do it because of this post, please post on the Chasing Rainbows Facebook Page and know that you will have our deepest gratitude.

This is a hard day. But it's a day that holds so much hope.

Please say a prayer for Miles!!! And don't forget to pray for the donor family who is grieving as they are giving. I know first hand that giving during grief does bring comfort to those left behind.

I never know the words to write when I read one of your posts. They always touch me at such a deep level and I just always want to let you know that. I can't imagine the enormity of what you all are feeling and my heart just goes out to you constantly. This is such a full post of so many various emotions. I am glad your sister was able to help you guys today to have a little break. Thank you for sharing about Miles, his family and the donor family are in my prayers now too.

I can not write as beautifully as you but I just want you to know you, Ed, and Brian have been in my thoughts and prayers since I first learned of your heartbreak. Your sweet Darcy and wonderful Gavin are certainly watching over you all. They will forever live in your hearts. Much love to you all.

Your post made me cry again, prayers for you and your family! Miles and his family are in my prayers as well. And for the giving family! Such a sad day this must be for them as they begin the process! I know Gavin is with both families giving them comfort!

Amazing. I am praying for Miles, and of course for your family too. And I wanted you to know that Gavin did change the way I think of organ donation. I signed up, and told my family. Love and light to you.

I am sending you big, big hugs. My Dad & Mom have both passed away ( I don't like that phrase, I would rather say moved on to a bigger & better place) and know how hard it is, especially since most of my friends still have their parents. I can't imagine how hard it is for you to lose your child. I wish that I could take away all of your pain and turn it into joy and happiness. Unfortunately I can't do that. I can't do that for you or anyone else, even though my heart aches to do it. I wish you peace and that someday your pain may not feel so overwhelming. I have sent prayers and good thoughts to Miles and I am already an organ donor and years ago convinced my husband to do it to. Gavin inspires me to be a better person everyday, just in little things. I have never met him or you and yet he inspires me. I try to be a little more patient and understanding of others. Whenever I feel myself getting upset over some silly little thing, I think to myself "Seriously, you're really going to let this bother you. Gavin probably wouldn't have let it bother him." And then I realize just to laugh and let it go. I've been trying to let people go in front of me in line, donating clothes and food and next I'm going to try and find a way to donate my services somewhere (I'm a massage therapist and I know there are probably many who can't afford it). Whenever I do anything like that I also think this is for you Gavin you're my superhero! Thanks for sharing such a personal journey with the world, you and Ed are great parents and great people. Thanks for letting us into your life, it's a wonderful gift.

Hi Kate, I went onto my dmv website in California today and chose to donate my organs today because of your post. Thank you so much for opening me to do that today. It was so simple and can save several lives some day! I have been following your posts since someone on my facebook page liked one of your posts and I have thanked her for doing that. I have found a patience for my two boys that I did not have before. The way you write is so honest and open! You are very brave to be so free with your emotions in your posts and blogs. You really inspire me. Gavin has touched me and I am all the way on the west coast and have never met him. Thank you for introducing your family to me. You are changing my life and this is a very special gift you have given me.

I am very sure Brian doesn't ever feel like you're pushing him away. He's at the age where he still thinks the world revolves around him, so that thought would not cross his mind. Especially if he gets to watch TV, AND go to a fancy house. You and Ed getting time alone means you can refuel for him, so it's good for everyone to have time to themselves.

I've been thinking of Miles since you told me, and hoping everything went as well as possible tonight.

wise woman once told me that in some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room"

Kate, I continue to think of your family several times a day and pray for you all. Wanted you to know that though I haven't commented as often as I'd have liked you're still very much on my mind. I'm sorry I'm not very good with words. I just have been claiming this truth for you that Jesus says he will never abandon us. I've been praying and claiming that truth over your family that you may know His presence and love in a very real and strong way daily. Hugs from here in Ontario.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

Thank you for visiting and caring about our family!

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!